This blog is about my life dealing with multiple digestive problems and feeding tubes. But it is also about my life in general, being married to M, working as a psychologist, having fun, being happy, and living life to its fullest no matter what.

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Monday, January 25, 2010

I just posted last night on how I thought I had my pump figured out. Well, that's what I thought.

As usual, I put my 750 ml into my feeding bag, programmed the pump to run at 120 ml/hour - thinking that it would run at 125 ml. I also programmed the goal volume of 750 ml, even though this had been of no use anyway because I always had an empty bag alarm before the pump reached the set volume. This happened because the pump "thought" that it was running 120 ml/hour. Since it actually ran faster than that, the bag got empty before the pump was able to meet the set volume.

That's how it has been for the past two weeks. I always woke up to an empty bag and an empty bag alarm, but it never alarmed for reaching my goal volume.

Well, when my pump alarmed this morning, I switched on my nightlight, looked at my bag and thought "What the f....?" There it was, even though I had added 750 ml plus some extra, there still was a tiny bit of formula left in the bag and the alarm I had just gotten was not my usual empty bag alarm, but an alarm for "set volume reached".

I could not believe my eyes! This also meant that it was later than I had wanted it to be, because obviously the pump had run at 120 ml/h and not at 125 ml/h.

The question is: what will I do tonight! Will I trust my pump that it has suddenly decided to be exact and run it at 125 ml/h and risk having it run higher, or will I stick to my 120 ml/h and risk it taking longer.

Sunday, January 24, 2010

After all the good things I read about the Infinity pump, which is being distributed by Nutricia here in Europe, I decided to try to get one as well.

Easier said than done. First of all it is quite expensive to rent, you have to pay a fee every six months compared to the one-time fee I paid for my current pump. I thought about buying it because it is actually not that expensive, but I was told that even though I won't have problems with my current insurance company, once I have to switch to Austria's major insurance company in July, I will run into problems. This insurance company decided last October that they were only going to pay for feeding sets from Fresenius Kabi, my current pump manufacturers. Even if I buy an Infinity and tell the insurance company that this is what I have at home, they won't pay for the feeding sets. In the end I would have to go back to my Applix pump anyway.

That's why I decided to stick with it. Plus, I have used the Infinity in the hospital before and my new Applix pump definitely is a lot quieter.

I have now found out that if I want my feeds run at 125 ml/h, I have to set the pump at 120 ml/h. At 110 ml/h it has the least error rate.

Tuesday, January 19, 2010

I have been doing my psychology internship for a little over a week now and I am still loving it. It makes me feel alive and happy. This is what I have worked so hard for in the past few years.

I have started to see my first rehab patient, and my supervisor actually totally trusts in my abilities and has let me treat her all by myself today and yesterday. I am working on concentration, attention, and memory with her.

Psychologists, here in Austria, get to wear white coats just like doctors. Yesterday my colleague, who is doing his internship in clinical psychology there, asked me how it felt to wear a white coat.

I have to admit, it feels good. I feel respected, looked-up to, and really grown-up. Given my history I have had my share of psychologists in white coat, and I can't believe that I am on the "other side" now. I am the one in the white coat now, who walks into a patient's room and picks them up for treatment or psych testing.

But there is one more advantage of wearing a white coat: I have three pockets to stuff with - snacks, meds, tissues, lip balm, etc. and that's perfect for me, especially being able to always carry small snacks with me! I even sometimes put my Starbuck's mug into one of my pockets :-)

Thursday, January 14, 2010

I started my psychology internship at a neurology department of a big viennese hospital on Monday and I am loving it!

This is exactly what I want to do!!!

I get to attend the daily morning meetings at the ward, listen to what patients were admitted since the last meeting the day before, try to figure out for myself if I can spot the lesions or bleedings in the MRIs or CTs that are being projected on a big screen and just soak up lots of medical talk and language.

For now I am just shadowing my supervisor and my colleague, but hopefully pretty soon I will get to carry out some diagnostic tests as well. And I will also probably get to carry out some rehab sessions with a new patient next week.

Friday, January 8, 2010

I have been on pump-assisted tube-feeding for over a year now. Within this year I have gone through three Sondomat plus pumps and one trial run of an Applix pump.

For the longest time I had problems with my pump not alarming when the bag was empty and just pumping air into my stomach...
I therefore went through all those Sondomat Plus pumps and the Applix pump trying to find a pump that would finally work for me. But usually after a few weeks, each and every pump was as bad as the last. We then realized that my enteral formula has a very high viscosity and therefore all the pumps have a really hard time recognizing an empty bag/ giving set, as there is always some residue left. I then had the very brilliant idea of programming a set tubefeeding volume and that way the pump alarmed when the goal volume was reached. Ever since then I have been using the same Sondomat plus pump and have been quite happy with it.

Last night, at 2.39 to be precise, my pump started alarming, I woke up and realized that I had forgotten to recharge the battery and thought that the battery must be running low. I switched on the light, looked at the display and realized that it didn't show the symbol for low battery. I stopped the alarm, attached battery cable nonetheless, switched the pump back on - and E11 - it said on my display. I then got up, somehow managed to find the user manual for the pump, flipped through the troubleshooting section and there it was: E11 - error message - call service!
I went back to bed, tried to restart the pump a few more times, finally gave up and tried to fall back asleep feeling very defeated.

In the morning I got up, called my homecare agency, talked to my regional coordinator and was told that the Sondomat plus is a really old pump, not being manufactured anymore and that I had to switch over to an Applix pump. I have already once tried an Applix pump and I actually preferred my old-fashioned Sondomat. She then had an enteral care nurse come over (incidently the same very knowledgable nurse that I saw for a consultation regarding my stoma care on Tuesday, but that will be an entire post by itself), deliver the new pump and explain it to M, as I was working all day.
M recharged it all afternoon, and when I came home just before 6 PM I could not wait to have a look at it and program it for later. I opened the door to our bedroom and of course my cats ran into the bedroom. I therefore unplugged the charging cable and put it away to keep it safe from those sharp teeth of my feline companions.

I then proceeded to switch on the pump. Nothing happened. Tried it again. Nothing. What the f....?
Plugged the cable back in, switched the pump on, and yes it worked. Unplugged it while the pump was on and the display turned black once more. It didn't even make one single beep that it was low on battery or something, it just turned itself off.

Called my regional coordinator again, feeling a bit bad, as it was Friday evening. She was not impressed and I guess first didn't believe me. I tried telling her that a pump that would not run on battery is not something I can live with, not even over the weekend. The problem is that due to the fact that I have to work with a set volume, I can't just unplug myself and wheel my IV-pole to a different room and plug the pump back in because the pump will always reset itself after being turned off, meaning that the amount that had been delivered thus far would not be memorized, I would have to write that down before switching the pump off, and subtract that amount from my set volume and program a new set volume!!!

I asked her if there was really no other pump for me available in all of Vienna, also telling her that the pump that I was given was way past its last service date. She then admitted that she had a brand-new Applix pump at home, but in the same breath told me that there was no way that she would get to me tonight with the weather being that bad. I told her that I of course understood that, I just didn't want to get by with this malfunctioning pump over the weekend, and could I possibly come and pick up the pump myself tomorrow morning?

No, I don't have to do that, she will come by tomorrow morning and deliver the pump to me personally. Please keep your fingers crossed that the pump I will get tomorrow will be working well!

Friday, January 1, 2010

M and I had two really fun days. On Wednesday we went skiing in the morning, but gave up by noon due to bad weather. It was snowing so badly, couldn't really see anything and that does make skiing not a very fun thing to do.

Yesterday morning we originally wanted to be up on the mountains by 9.00, but it was snowing so badly that I was really worried that we had a repeat skiing episode of the day before. Therefore I convinced M to go back to bed with me and have an after-breakfast snooze. He had a really hard time relaxing because all he could think of was our very expensive three-day-skiing-pass being wasted by staying in bed. But I was right!

By the time we were up on the slopes around 12.30 we had sunshine and blue skies and perfect new snow. And I didn't make the same mistakes again regarding food like I did on the first day. Instead of having a "real" lunch, I had some tubefeeding formula and plain rice at 11.00 and that way I wasn't feeling as bad while skiing.

Talking about my skiing - what a difference!!! M was still quite frustrated with him, until I said to him: "you know what, I can't see properly with my snow goggles, and if I can't see the hills I am going to go over how I am supposed to ski well?". It turned out that my cap kept blogging the ventilation part of my snow goggles, and once we fixed that I was back to my old good skiier self! M just couldn't believe the difference!
I had so much fun skiing after we fixed my goggles and was quite sad when I was exhausted after a few hours and we eventually had to stop.

Our NewYears Eve was wonderful, spent at our friends' with some of their family, lots of good conversations, a breathtaking view of all the fireworks and M and I even got to dance a Viennese waltz to "Blue danube waltz" as it is custom in Austria. And now that we actually know how to dance a Viennese waltz we of course had to dance!

Our hosts were so wonderful in preparing foods that I could eat, but I had had an early dinner before coming over to their place (didn't want to have a repeat experience of our first evening out). They were really kind accommodating my allergies, and I felt really bad for not eating lots. I knew I had to hook up more tube-feeding than normal to compensate for the extra calories used while skiing and I didn't want to risk eating late again with them (even if it is food that I can normally tolerate) and not be able to hook up all my formula.

We are invited to dinner once again tonight at their place and I know they are planning on an early dinner (which is 7.30 for them), and I don't want to not eat anything again because I don't want to be rude. Will take an extra dose of domperidone and keep my fingers crossed that dinner will sit well.

But I am really looking forward to some very interesting conversations again tonight - lots of brain talk going on yesterday, which is right up my alley!

About Me

I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficieny, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies).
When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube.
After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information.
As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button.
Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum.
Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed.